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Julie.1 Still feel shocked


julie.1
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Hi,

After a lovely relaxed weekend with my family I experienced a SAH whilst at the gym with my daughter (14yrs old). I hadn't begun to do much other than a warm up, but felt like I had a headache coming on. As I commented to my daughter the headache became much worse and she helped me get outside and sit on a bench, by this time I was shaking and finding it difficult to talk. Luckily we live very close by and my husband came to get us in the car. I could not stand upright by this time and started feeling sick and very dizzy.

Its all a bit confused from there, but I was very sick and complaining my head was agony. My husband called 111 and was asked to take me to a GP walk in centre for an appt in 2 hrs . I think I knew something was wrong because I asked him to call 999 - unfortunately they would not send an ambulance out (I think because we had spoken to 111 and had apt later?). They kept asking if I had stroke symptoms, but I didn't fit the usual FAST signs, so no one seemed to suspect haemorrhage. My husband and daughter man-handled me into the car and got me to the hospital but I couldn't walk by then or stay sat in a wheelchair. Was sent to see the GP clinic and given pain and sickness injections, then sent to A and E about an hour later. I don't remember much of this, but my poor daughter and husband were trying to move me all around the hospital in a wheelchair whilst I was very poorly and couldn't stay sat up.

I had a CT scan in the early hours of the morning (my first symptoms were at 3.30pm) and was sent to a ward for observation overnight. I honestly thought I had suffered a severe migraine, or stomach bug and would be going home. I remember saying to my husband it couldn't be serious because they would have told us sooner and no one seemed to have taken my symptoms that seriously since I arrived. Then the Dr came and said I had suffered a bleed in my brain and would be transferred to another local hospital that had a specialist neurology dept. I was admitted to the neuro HDU at about 4 in the morning feeling scared and confused. My husband was told the situation was very serious, but I don't remember being told anything much. I spent two weeks in hospital and have now been home for a week and a half. Coming home was really frightening and I just didn't feel like 'me' anymore. My poor kids and husband are still very worried and traumatised and I am still feeling really shocked.

From what I understand I had an unexplained SAH with no aneurysm, so no surgical treatment. Have just finished 21 days of Nomidopine. I have had very little advice about what to do/ not do now. Found this site when trawling the net looking for some information and support.

Hope I have done this right and posted in the right place, haven't used a site like this before and my mental faculties are not sparkling at the moment!

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Hi Julie,

Welcome to BTG.

Unfortunately it's all too common that SAH survivors leave hospital without hardly any recovery information.

You and your family have been thrown into a whole new world, no doubt learning words you've never even heard from before.

Were you given a contact number for a Neuro Nurse Specialist you can contact if you need to?

I'd recommend you speak to your gp, have a home visit if you're not feeling well enough to go into the surgery.

There is also great help out there from Headway and The Brain and Spine Foundation.

It's very early days for you, you've done well to get online so soon!

Try to rest as much as you can and drink plenty of water.

BTG is a wealth of support and advice, it'll help you through the journey of recovery.

Wishing you well, take care,

SarahLou Xx

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Oh so glad you found this site so soon. You are not alone with your experience and lack of discharge information. There are many good threads to read in older thread section. There are several of us here that have had the "NASAH" bleed. I am coming up on my 2 year anniversary soon.

Take care, rest, eat well, you need to ask for help and not over do it - it was your brain that bleed not a broken arm! I think we all felt traumatized a bit. I was in a deep (drug??) fog for weeks and really did not get much for months. But here I am and I know it will never happen again so that makes me feel much better.

Fast healing to you. maryb

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Hi Julie,

I had my non anuerysmal SAH (NASAH) in April so I'm a little over 4 months. You will get used to seeing that acronym. I understand your shock and fear. Reality hit when I got home. So much to read and some are scary. After my third angiogram my neurosurgeon released me. I felt like I was left out in the middle if no where with no energy to figure out what to do next.

Thank goodness for family and friends. Depend on them especially the first couple of months. Mentally and physically, you are drained and the question of "why" is never really answered. More importantly, begin the healing process. It can be difficult at times but the sun will start to shine again. Remember, you are very blessed to be alive.

Iola

Edited by iola
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Hi Julie,

A warm welcome to Behind the Gray. I'm glad you have found this site which is such a good source of support and advice. It is especially helpful at a time when this unforseen event suddenly happens, taking us by surprise and throwing us and those around us into a whole new world of confusion and worry etc.

This all happened very recently for you and it is very normal for you and your family to feel the way you describe, but I hope I can reassure you that it will improve over time. I was with my daughter at the time I had mine too - about 6 weeks before her 14th birthday - and it must have been quite an ordeal for her when I suddenly asked her to ring 999.

My two sons were 7 and 15 at the time so I can appreciate how you are all managing to cope at the moment.

Probably my best advice would be to take one day at a time. There may be a mix of good days, not so good or even bad days but these are normal - so any help they can give with day to day things will hopefully enable you to get some rest which is an important, but not always easy, aid in recovery.

Best wishes,

Sarah

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Hi Julie, warm welcome and glad you found us, yes you've posted in the right place but if you hadn't it wouldn't have mattered, we're all in the same situ.

Its all new and scary for yourself and family it gets easier with time honestly.

Think we all leave the hospital not knowing what to expect what to do, I think rest plenty do what you can, listen to your body when it says tired sit down do it. keep the liquid intake up, & know that it'll get easier and better just takes time..

take care

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Thank you everyone for the lovely responses, I feel much less alone now. It's so strange to go from completely well to so ill with no warning. The world feels completely upside down. I'm trying to do bits and pieces, but my body feels really weird and disconnected like I'm a Thunderbirds puppet! Everything smells weird too.....

I'll keep logging in and reading, it's been really helpful to read other people's experiences especially as recovery from SAH seems to be such an unknown quantity. Thank you for all the support once again.

Julie xxx

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Welcome Julie. Hope each day is a little easier and less scary for you. Finishing the nimodopene was a good day I recall; I celebrated with a kitkat in hospital and high fived the nurses even though it was still a while before I discharged but it felt like a worthwhile milestone and will be the first of many small but notable achievements you will make.

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  • 1 month later...

Welcome Julie. You will get better. Our circumstances are very similar. It has been 18 months for me and I am feeling very well. It is traumatic, shocking and scary ... even more so when you leave the hospital and come home. For me, I remember feeling as if I was watching someone else's life unfold, not mine. And my family was just happy that I was alive and did not want to talk about it. One I found this site I realized that I was not alone. Take it easy, rest a lot as that is very important to a full recovery. This too shall pass.

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